Baylen Out Loud – Learn More About Tourette Syndrome
Baylen Out Loud is a TV show that follows Baylen Dupree, a young woman diagnosed with Tourette Syndrome (TS), as she navigates daily life with the support of her family. The Tourette Association of America (TAA) is grateful for Baylen’s efforts to raise awareness by bravely sharing her experience with TS, coprolalia, and other associated conditions. If you’re one of the many people visiting this page to learn more about TS because of the show, we welcome you!
TS affects each person differently, including symptoms that vary in severity and change over time. Further, 83% of people living with TS also face other co-occurring conditions such as OCD, ADHD, and/or mood and anxiety disorders. Because of the highly individualized nature of TS and its associated conditions, we discourage anyone from making generalizations about TS based on the experiences of one individual. As we often say, when you’ve met one person with TS, you’ve only met one person with TS
To continue to support Baylen and the broader TS & Tic Disorder community, we’ve developed this page to serve as a resource for every member of the show’s audience who seeks more information or support. Below, you’ll find the latest science-backed information and resources related to the themes discussed in the show to help audiences understand and appreciate the realities of living with these conditions. This is especially important for the estimated 50% of individuals living with TS who remain undiagnosed and may see the show as well as others who do not already have a base of knowledge surrounding TS.
As the only national organization dedicated to serving people living with TS, it is central to our mission that we educate the public and fight stigma. To that end, we invite you to explore and share the resources we’ve gathered below. Contact us directly at support@tourette.org or 718-224-2999 if you or someone you know experiences tics and needs support.
Learn More About Tourette Syndrome
What is Tourette Syndrome?
Learn exactly what Tourette Syndrome is and what it isn’t, including information about symptoms, onset, prevalence and more.
Debunking Myths and Misconceptions
TS is a highly stigmatized condition and there is a lot of false information out there. Learn what is fact and what is fiction.
Accessing a Diagnosis
50% of people with TS live without a diagnosis. If you or someone you know has tics, please learn more about getting diagnosed.
Access Support
Get Personalized Support
The TAA is here to help you or someone you know access the support they need to navigate the challenges associated with TS and other Tic Disorders.
Resources and Guides
Explore the many science-backed guides and toolkits designed specifically for you or someone you know.
Find a Provider
Ready to meet with a medical professional who can answer your questions and eventually provide a diagnosis?
Topics from Past Episodes
Expand the sections below to find more context and information about the themes presented in past episodes.
What is Tourette Syndrome (TS)?
TS is a neurodevelopmental disorder that is part of the spectrum of Tic Disorders and is characterized by sudden, involuntary movements and/or sounds called tics. Individuals with TS experience at least two motor tics and one vocal tic for longer than a year which are not due to another known medical condition.
Prevalence
Tics are not rare and occur in as many as 1 in 5 school-aged children. Some occurrences may be transient, while others will persist into adolescence and adulthood.
According to the US Centers for Disease Control and Prevention (CDC), the current prevalence estimates of TS and Persistent Tic Disorders are:
- 1 of every 160 children between the ages of 5-17 in the United States lives with TS
- 1 of every 50 children lives with TS or another Persistent Tic Disorder
Data suggests that about half (50%) of US children with TS are undiagnosed.
Coprophenomena
Coprolalia is the medical term used to describe the involuntary and uncontrolled utterance of obscene words or offensive, socially inappropriate and/or derogatory remarks. Copropraxia is a related complex motor tic symptom involving obscene or other socially inappropriate gestures. Together, these symptoms are described as coprophenomena.
The general public often erroneously believes that coprophenomena is a common symptom of TS. Most people living with TS do not experience coprophenomena. While some estimates indicate that as few as 10% of people living with TS experience these types of tics, there is evidence that the stigma surrounding this aspect of the condition has led to an underreporting of these symptoms occurring at some point in an individuals’ life.
The presence of coprophenomena symptoms is not related to one’s intelligence or character, nor do these symptoms represent willful or intentional behaviors.
Understanding and acceptance of the symptoms of TS and other Tic Disorders, including coprophenomena, is key in helping people with tics lead full and productive lives.
Stress, Anxiety, & Tics
Like many other medical conditions, stress exacerbates the symptoms of TS and other Tic Disorders. 83% Of people living with TS also experience a co-occurring condition like ADHD, OCD, and/or a anxiety disorder. High stress situations can compound the daily stress brought on by living with tics to a severe degree. Efforts to suppress tics while in public can be extremely physically taxing and painful, adding to stress. This guide contains helpful information for managing tic-related stress and anxiety, while this video provides a community perspective on living with TS and anxiety, and this video discusses helpful management strategies drawn from Acceptance and Commitment Therapy (ACT).
Echophenomena - Adopting or "Catching" Tics from Others
Individuals with TS may feel apprehensive about being around others who experience tics, fearing they might unintentionally adopt or “catch” additional tics experienced by others. Individuals and their care teams must weigh this risk against the benefits of coming together in community to learn more about their condition, access additional support, and make life-long connections with others in the community.
Adopting tics is related to echophenomena. There are three types of echophenomena: echolalia – repeating the words of others; palilalia – repeating one’s own words; and echopraxia – repeating the movements of others. These echophenomic tics can then become tics individuals experience regularly.
Dystonic Tics
A dystonic tic is a type of tic where a person temporarily holds an unusual position or posture. Unlike the quick, jerky movements commonly associated with tics, dystonic tics involve sustained motions or positions. For instance, a person might hold their foot or head to one side for a few seconds. These movements can appear deliberate, but they are involuntary and not within the person’s control.
Dystonic tics are less common than other types of tics and often seem more complex or unusual. Because they look so different from typical tics, there is some debate among experts about whether they are true tics or overlap with other movement disorders, like dystonia. Despite this uncertainty, many individuals with TS or other Tic Disorders report experiencing these movements, which can be both distressing and physically uncomfortable, adding to the challenges of living with a Tic Disorder.
Tic Attacks
Tics manifest differently in each individual with wide variations in severity, and the response to stress and anxiety can also be expressed in various ways. Some individuals with TS have reported experiencing a ‘tic attack’ in response to high-stress situations where multiple tics occur in rapid succession or severe tics occur. Tic attacks can be described as very challenging to suppress and can be physically exhausting and distressing for individuals who experience them. Individuals should speak with their care team about how to manage stress and severe tics.
Sensory Processing Differences
Sensory Processing is defined as the way in which the body receives, interprets and responds to sensory information across the five traditional senses. Sensory processing differences may be seen in people diagnosed with TS and other neurodevelopmental conditions, and can result in sensory information feeling overwhelming or stressful. Some may be hypersensitive (over-responsive) to certain sensations, while others may be hyposensitive (under-responsive) and seek out sensory input. Learn more through our video about common sensory processing differences for people with TS and how to support.
Tic Severity
Tic severity is measured by looking at different aspects, like how often the tics happen, how strong they are, how complicated they are, and how much they affect daily life. Doctors and researchers often use tools like the Yale Global Tic Severity Scale (YGTSS), a widely trusted method, to assess tic severity.
Complex and Simple Motor Tics
Simple motor tics usually involve just one group of muscles. Examples of simple motor tics include eye blinking, facial grimacing, arm jerking, and head bobbing. Complex motor tics usually involve multiple muscle groups or combinations of movements. Examples of complex motor tics include twirling, hopping, pinching, and tearing paper or books. Copropraxia, discussed in the coprophenomena section of this page, can be an example of a complex motor tic.
Complex and Simple Vocal Tics
Vocal (phonic) tics are tics that produce a movement of air through the vocal cords. Simple vocal tics include sniffing, throat clearing, grunting, barking, and shouting. Complex vocal tics include words or phrases that may or may not be recognizable and can occur in and out of context. Coprolalia, discussed in the coprophenomena section of this page, can be an example of a complex vocal tic.
Environmental Impacts on Tics
A person’s environment can significantly impact their tic frequency and intensity. Tics could be less frequent and/or less intense early in the day but become more noticeable and disruptive as the day progresses. Tics may worsen with excitement or anxiety and can get better during calm or focused activities. As discussed more fully in the stress and anxiety section of this page, stress will almost always increase tics. Watch our video on the impact of environmental stress on adults with Tourette Syndrome.
Comprehensive Behavioral Intervention for Tics (CBIT)
Comprehensive Behavioral Intervention for Tics (CBIT) is a nonpharmacological, behavioral therapy-based treatment for tics. CBIT helps train individuals to be more aware of their tics and the urge to tic and teaches them to pursue competing behavior when they feel the urge to tic. It also helps patients determine positive changes to day-to-day activities in ways that can be helpful in reducing tics. Although there is no question that tics are neurological in nature, they are often also extremely sensitive to the environment in which they occur, which means behavioral treatments can be helpful.
Medication & Tourette Syndrome
There is no medication that cures tics in TS, but some medicines can help reduce tic severity or other associated symptoms. Regularly, doctors prescribe medicines used to treat other conditions that have also been found to reduce tic severity, including treatments for ADHD, OCD, depressions, psychosis, or various other behavioral, neurodevelopmental and mental health disorders. Individuals may work with their physicians for several months or years to identify a specific solution that both effectively reduces tic severity while minimizing negative side effects, which can be further complicated by the shifting nature of tics. To learn more about the medications that may be used to treat the symptoms of TS, please review the guidelines found here.
Botulinum Toxin Injections as a Treatment
Botulinum toxin injections have been used for the treatment of tics and are most often used to target specific areas of the body associated with a regularly occurring tic. In addition to substantial anecdotal experience, there are several studies that conclude these injections can be helpful in treating both motor and vocal tics. There may also be side effects to understand and navigate. As always, it is important to discuss treatment options like Botulinum toxin injections with your medical provider. If recommended, your provider may refer you to a provider experienced in administering these types of injections to treat tics. Learn more about Botulinum toxin injections and TS.
Exercise, Wellness, and Tics
Exercise, stress management techniques, healthy sleep habits, a healthy diet, and mindfulness can have a positive impact on efforts to manage tics, often leading to a reduction in tic severity by helping individuals regulate their stress levels and overall wellness. However, the effectiveness can vary greatly between individuals and may require personalized approaches to find what works best for them. As always, we encourage individuals to collaborate with their care team on what approaches to try.
Tourette Syndrome & Genetics
Research has shown that there is a genetic component to Tourette Syndrome, and researchers are actively working to map the markers that are related to the condition. This means that TS can ‘run in families’ and affect several members of a family to varying degrees.
Researchers estimate that about 400 genes can each increase the risk for TS and other Chronic Tic Disorders and approximately 10-12% is due to a new mutation.
Emotional Overload
Emotional overload is a common but often misunderstood aspect of Tourette Syndrome (TS) that affects both children and adults. It can appear as intense emotional outbursts, sometimes referred to as rage attacks, emotional dysregulation, or sensory overload. These reactions occur when an emotional response overwhelms a person’s ability to cope and doesn’t match the situation. For example, an adult might become disproportionately frustrated during a routine work task, or a child might have a screaming fit when asked to move their shoes. Emotional overload can also happen in positive situations, such as continuing to celebrate disruptively after being asked to calm down. These episodes can seem unpredictable because a person’s ability to regulate emotions can vary from day to day. Emotional overload affects about half of individuals with TS and is especially common among those who also have conditions like ADHD, anxiety, or OCD. These co-occurring conditions make it harder to filter emotions, thoughts, or sensations—a challenge rooted in brain function rather than behavior. While the exact causes of explosive outbursts remain unclear, research suggests they may be linked to differences in brain function related to emotional regulation and control. For viewers of Baylen Out Loud, understanding emotional overload offers insight into the daily challenges faced by both children and adults with TS, reminding us that these emotional responses are part of a complex neurological condition, not something a person can simply “control.”
Read our guide on this topic: Emotional Overload: Understanding Non-Tic Related Behaviors in TS
Chronic Pain
87% Of adults and 72% of children who live with Tourette Syndrome or another Tic Disorder reported experiencing physical pain because of their tics (2022 TAA Impact Survey). Explore our YouTube playlist to find videos on reducing pain caused by tics.
Flying with Tics
Traveling can be stressful for everyone, but flying with Tourette Syndrome can cause significant added stress. This guide and accompanying video provides tips and considerations for booking your flight, navigating the airport, in-flight experience, disclosing with fellow passengers/flight attendants, TSA Cares Programs, and more.
Living Independently
With the proper support and ready access to accommodations and resources, the vast majority of people diagnosed with TS or another Tic Disorder – including those who experience severe tics – go on to lead fulfilling and successful lives independently.
Dating with TS
Dating can be a challenge for anyone, regardless of whether they live with a disability. When living with TS, there are factors one might feel they need to consider that those who do not live with TS might not. 51% Of adults with Tourette Syndrome or another Tic Disorder reported that tics prevented them from forming meaningful friendships or romantic relationships (2022 TAA Impact Survey). Watch our video on navigating dating and relationships as an adult with TS.
Training and Support for Family Members
As a condition that most often becomes evident in childhood, people with TS are regularly supported initially by their immediate family members. It is important that these individuals also receive information and support tailored to their needs, so that they can be the greatest advocates and caregivers for their loved one(s) living with TS or another Tic Disorder. The TAA is excited to offer these free resources:
Alcohol, Substance Use, and TS
Each individual’s preference about alcohol and substance use are entirely their own. While some individuals with TS report alcohol and other substances exacerbate their symptoms, others report that they are helpful. 30% Of adults surveyed in the TAA’s 2022 Impact Survey reported consuming alcohol or substances to the point where they sought medical help for this issue. Respect each individual’s preferences and refrain from pressuring anyone to engage in behavior with which they do not feel comfortable. It is important to remember that alcohol and other substances may interact or inhibit the effectiveness of medicines prescribed to treat TS and other co-occurring conditions. Please discuss alcohol and substance use with your medical provider and care team before proceeding.
Suppressing Tics
Tics are often preceded by a premonitory urge, which is difficult to suppress. People living with TS have compared the feeling of suppressing a tic to holding back a sneeze, stopping oneself from blinking, or refraining from scratching an itch. Some people may attempt to suppress their tics, and the strain caused by this effort can lead to increased tic intensity at a later time. Tic suppression is not always possible, and not all people are able to suppress their tics.
Reacting to Tics
People living with TS have different preferences around how others interact, or don’t interact, with their tics. Please ask the individual personally impacted about their preferences when appropriate. When first meeting someone living with tics, it’s often best to ignore their tics and continue the interaction the same way you would with anyone else.
TIC-CON
TIC-CON is the Tourette Association of America’s annual national conference that brings together the community of people impacted by TS, Tic Disorders, and associated conditions. The event includes various tracks of content designed for youth, teens and young adults, adults, parents and guardians, doctors, and other allied health professionals. You’ll learn new skills, explore new research and treatment options, and make friends that will last a lifetime! TIC-CON is held in person every other year – this year’s event will be virtual.
TIC-CON26
TIC-CON26 will be held in Nashville, TN, from June 12 to 14, 2026. Thinking about attending? Click the button below to fill out our interest form and be the first to know about all things TIC-CON, including information on sessions, speakers, presenter opportunities, sponsor opportunities, and much more.
Deep Brain Stimulation (DBS)
Deep Brain Stimulation (DBS) is a potential option for select Tourette Syndrome patients whose motor and/or vocal tics significantly impact the quality of life despite pursuing other treatment options to the fullest extent. DBS utilizes an implantable electrode to alter the activity of brain circuitry.
The procedure is FDA-approved for Parkinson’s disease, essential tremor, dystonia, and OCD. While DBS is not currently FDA-approved for treating Tourette Syndrome, several studies suggest it can be an effective treatment option for severe cases, leading doctors to consider it as a viable treatment for certain patients. As seen throughout this season of the show, doctors regularly work with their patients to pursue all other treatment avenues before pursuing DBS. Every year, there are more and more individuals living with TS who successfully pursue DBS as a treatment option.
If you are interested in pursing DBS as a treatment, please discuss the potential benefits and risks with your care team. Learn more about Deep Brain Stimulation in this FAQ.
Tourettic OCD
Tourette Syndrome is more than just tics—it’s a dynamic and multifaceted condition. Tourettic OCD, sometimes abbreviated as TOCD, is a clinical term used to describe the symptom overlap between Tourette Syndrome and Obsessive-Compulsive Disorder (OCD). This term highlights a unique presentation of symptoms where tics and obsessive-compulsive behaviors intertwine in ways that require a comprehensive approach to the management and treatment of both conditions simultaneously. While OCD and Tourette Syndrome are distinct disorders, they often co-occur. Around 50% of individuals with TS also meet the criteria for OCD, and up to 90% exhibit obsessive-compulsive behaviors. The compulsive urges in TOCD are often tic-like, such as repeating a tic until they feel “just right” or needing to experience sensory symmetry. A person with Tourettic OCD may feel compelled to perform repetitive actions, such as tapping or blinking, to neutralize an internal discomfort or satisfy an indescribable sensory need. These behaviors blur the lines between tics and compulsions. This fusion often makes the treatment and support for TOCD more complex than managing tics or OCD alone. Effective management of Tourettic OCD requires a comprehensive, multidisciplinary approach that addresses both tics and obsessive-compulsive behaviors.
